I have been telling the following story to anyone who will listen. I tell it for two reasons. First, I want to remember it forever, and I hope that by telling it over and over again, I will brand it into my brain for eternity. Second, it’s a really great story that I know people will love to hear. But something completely unexpected has arisen in my telling it.

Very few things are sweeter than the kiss of a toddler coupled with a truly adoring, “I love you.” Any parent would likely agree. Sarah did that the other day with a kiss on my cheek. And this time, she decided to add something to it. She told me to close my eyes, and she softly kissed each eyelid one by one. She kissed my right cheek again. She kissed my left. She kissed my forehead and then pulled back, studied me for a short moment to figure out what else she could kiss, and then moved in to kiss my chin. She kissed my lips. She pulled back once more, looked at my face, giggled, and moved in to get under my chin and kiss my neck. Proud of all she’d uncovered that could be kissed on my face, she sat back nearly triumphantly and smiled. She then moved her hands around and across the space just in front of my face as if to scoop up something from the air and said, “OK Mommy, now wrap them all up and put them in your pocket so you can give them to your friends all day.” I melted.

I told this story to two colleagues later that morning and got the reaction you’d expect. They laughed. They oooh’d. They aaah’d. They agreed that was one of the most priceless toddler tales they’d heard. And I gave them each a kiss from my pocket. It was a good day.

I came home that night and told Brian. I told my Mom on the phone the next time we spoke. I told my best friend. I even told some strangers in the weeks that followed. I kept telling the story with the intention of blazing it into my brain, so I would never ever forget the sweetness and the feeling I had had in that moment. I even wondered what could possibly beat this story. It occurred to me that I might have already experienced my very best moment with Sarah, and I wanted to savor it for all eternity. Then it hit me. What was my very best moment with Catherine? What had happened that I wanted to savor for all eternity? Did we even have one? Or was it still waiting for us?

That stumped me. And my heart sank. I couldn’t think of anything.

What was my very best moment with Catherine? Did I have one? Facing that question made my stomach ache. Surely I must. But nothing came to mind immediately so I beat myself up for not spending enough time with her and not doing enough with her. I kept driving wondering what it might be or when it would happen or if it ever would happen. That was not a good day.

My stomach woke up. I felt excitement. And a picture floated to mind of when Catherine was also a toddler – possibly two or three, I’d have to look it up, and she sat on my legs and did squats. This little girl who never would walk according to the medical community sat astride my thigh and did squats with a perfectly straight back and powerful legs. Over and over and over again.

As soon as I remembered that and felt the excitement, another memory overwhelmed me. She was much younger. I was struggling to figure out how she communicated. A teacher in our home suggested I bounce her on my knee for a bit, stop, wait and see what Catherine did. I followed her guidance exactly, and Catherine arched her back. Over and over again, she arched her back whenever I stopped bouncing her. She wanted more! My little girl who was “unable to communicate,” was talking with me in her own special way.

So now I have two. Which one is our very best moment? The one I want to hold with me for all eternity? I can’t decide.

I yelled up the stairs knowing the sound of the fan in the bedroom made my yelling futile.

BRIAN! BRIAN!

God, please let him hear me somehow.

How can I move to get the oxygen?

I fumbled with her head. Ugh – she’s lying in her vomit. I need to get the medicine. This is gonna be a big one. I need to get the oxygen.

Oh yeah – Sarah’s door is open.

SARAH! SARAH! GO WAKE UP YOUR DADDY!

Silence. Except the retching. And the gasping to breathe. And the crinkle of the plastic protectors lying under Catherine as I tried to move her body to get ready for the medicine sitting in a drawer a mere eight feet away.

SARAH! PLEASE GO WAKE UP YOUR DADDY! I swear she’s three years old going on sixteen and sleeps just like a teenager.

Set her down and just go get the oxygen and medicine. But what if she rolls off the bed? I can’t put her on her back.

Oxygen first or medicine? Medicine.

At least she pooped last night the nurse just told me in report, so the medicine will get in there and work really fast, I hope.

KY or the stuff in the box? The stuff in the box. I don’t have time to see if the KY is where it’s supposed to be.

SARAH! GET UP. GO GET YOUR DADDY!

“Why, Mommy?”

I finally hear the little voice. Instead of relief, I’m perplexed. Why? What do you mean, Why?

JUST PLEASE GO WAKE HIM UP!

“But why?”

Geez. How do I explain because Catherine needs oxygen since she’s turning blue? How do I explain a seizure? This will be the first one she sees in full force, I think. I just stumble…

“Because I need help, please.”

Sure enough, mere moments later, Brian rushed down, rubbing his eyes, wondering what he could do. By then, I had the oxygen cannula in Catherine’s nose. She was still in the bed, but the medicine was starting to work. The retching had calmed – at least for the moment. But her eyes were still shaking. Her body still quivered.

And I wondered to myself – yeah, what can he do? The reality is that that question sat beneath all my futile yelling up the stairs, around a wall and past a very loud fan purposely blowing to drown out the sounds of nurses moving around overnight.

There wasn’t much he could do by the time he got downstairs. He changed her linens as I held her. He gave me a towel to wipe her mouth. But mostly, he was just there.

A moment later, the retching started again. He was sitting on the bed beside us while I cradled Catherine in the rocking chair. As I leaned forward to put her body in a better position to vomit, he held her head. It really was helpful. Just by being present, he had helped. And then, because he was present, he was truly able to help – both Catherine and me.

After it all subsided, I went to wash out the tray in the kitchen sink. And there I realized that despite my ferocious independence – I really do want help.

I find the way the world works to be quite remarkable at times. Frequently, actually.

This week has been especially difficult at work. Yesterday, I had a late afternoon meeting out of the office, and rather than go back when it concluded around 5 PM, I went home. The work situation had kept me from getting home in time to hug my kids for numerous nights, and I wanted simply to be with them – especially Catherine. She goes to bed earlier than Sarah, so I had missed tucking her in and reading our story about “small people with wings” and saying prayers. I also missed holding her and just telling her I love her. You know – the little things.

I drove home happy that the difficulty was more or less behind me wondering what the best use of the extra time would be. I wanted to take Catherine for a walk, frankly, but we had a heat warning that dismissed schools early, and it was still over 90 degrees when I was driving home about 5:30. I turned the corner onto our street and was surprised to see our therapist’s car in the driveway – it wasn’t her normal day to come. “Yay!” I thought. “I can see what’s going on in therapy.”

Our therapist had emailed me recently to tell me about the progress Catherine was making – one of perhaps two times she’s proactively emailed me with news of great progress. I literally slammed the car in park, left my stuff in the car, and ran into the house afraid they’d be wrapping up and I’d just catch her helping Catherine out of her equipment.

God had other plans.

I opened the front door still wondering what I might be able to do with the girls that would be special since I was home early. And this is how the world works. I got to see Catherine standing tall in her gait trainer getting ready to practice walking. I made it. With no knowledge of what was happening in my house as I was driving home exhausted, I got home in time to watch my little bug, my butterfly, my teeny tiny daughter walk approximately thirty feet, and she did it three times! Take a look at this video if you have about 3 minutes and you’ll get to see a miracle. An honest to God miracle.

There is a popular country song that refrains the lyric, “I saw God today.” Yesterday, I knew that to be 100% true.

Two Mondays ago, we spent the day at AI duPont Children’s Hospital, confirming that Catherine needs surgery. Not just any surgery. A surgery where they will cut her bones on both her hips and one of her legs. A surgery that anticipates enough “discomfort” that Catherine will have to be out of school for a MONTH! And then – we’re told she she should be completely “comfortable” in 3-6 months. What? It makes my skin crawl.

“Discomfort,” of course is a euphemism for pain. And I really bad one, I might add. I just can’t let myself think about that much pain for my little girl. I say, “Bring on the drugs!” Not just for her; for me. Two weeks later, and I still can’t stomach it.

Thankfully, Sarah has a way of providing her own drugs for the pain.

When I come home at night, Brian frequently has music streaming through the TV on Pandora. We still play our game as I walk through the door:

Whoooooooo gets kisses first?

Daddy!

Whoooooooooooo gets kisses second?

Cackie!

Whooooooooooooooooooooooooooo gets kisses third?

Sarah!

Giggles and squeals still make this a perfect end to any sort of day. And now there is a new addition.

Sarah starts to wiggle and jump and run around in circles and then yells as loud as she’s figured out her lungs will allow:

Come on Mommy, Dance!

And so we dance. It barely matters what the music is, though fast is always better. We dance and giggle and spin and hug. And the reality is that this drug will do… for now.

Yesterday was Sarah’s birthday. I had hoped to write in this blog then, but work got in the way. Which makes me wonder if now, rather than the Observer, I’m the Executive Mom who puts work before her kids. Yuck.

I actually don’t think so. I actually think I’m pretty balanced about it. Brian might disagree, and he does occasionally ask why I’m coming home so late when I call leaving the office again after 7 PM. But I do try really hard to get to the appointments and be there on the big days, and say prayers every night and kiss and hug both girls every day. Is that enough?

Yesterday, I came home after a pitch rather than going back to the office. I had left the house too early to see Sarah, so I wanted to see her in the afternoon – not just for the bedtime routine. We needed to do cake and candles and presents before she was bouncing off the walls and telling me she had to eat AGAIN just so she wouldn’t have to go to bed just yet.

I had an idea! I called Brian as I neared the house, knowing Catherine was in PT. “What does Sarah do during PT?” I asked. “We usually play in another room,” he said. “Get Sarah ready. I’m going to take her to The Park.” Both of us knew this was a special birthday idea.

Sarah loves The Park. “Park. Park. Park,” she says as soon as the word is uttered. She stands near the door and repeats herself, “Park. Park. Park.” It’s sort of like a puppy. She loves the slides and running in an open football field the best. She likes the swings for a bit – longer and longer each time, actually. But she always tells me when she’s “all done” on the swings. She is never “all done” on the slides or running and twirling in utter freedom.

I didn’t even take time to change from my pitch clothes. Daylight was slipping away, and we needed to go quickly. We ran out the door and headed directly to The Park.

Less than 3 minutes later, I got The Call.

Work.

They needed to talk with me about a presentation we have today. Work. Sarah’s Birthday. The Park. Really? I suppose I could have said no. And that’s what the magazines all say a woman is supposed to do sometimes. Was this one of those times? Should it have been?

I pushed Sarah in the toddler swing until she was “All done.” I had to make my colleagues wait when I got her out of the swing because her feet got stuck. I told them where I was, so they had to put up with a bad cell signal, the other screaming kids, Sarah’s cries when the swing hit her in the lip at one point, me disappearing for a bit to pick her up and give her a hug and kiss her tears goodbye. By the time I finished the call, it was getting dark and cold and I had only a few minutes to sit on the big swings and hold her and repeatedly sing “Happy Birthday, dear Sarah…” as we swung into the twilight sky.

I hope I will forever remember that late afternoon swing. Sarah never told me she was “All done.”

Somehow, Catherine knows when it’s time to really pull out the stops and give us something incredible. And yesterday, she did it at the perfect time – during Brian’s birthday celebration at the house.

I was cooking meatloaf and mashed potatoes for him when nonchalantly, I heard him say, “Look at her.” I didn’t really know if he was talking to Sarah or if he meant something was happening. I kept cooking.

“Look at her, Ellen.” Oh – I got it now. I rounded the wall between our kitchen and den and saw Catherine standing perfectly straight, head held high, pushing against Brian’s hands for support as he leaned back in the chair. Quickly grabbed the camera and captured these shots, including the one of Sarah giving her a hug, as if to say, “Good job, Catherine!”

Getting started standing.

Pushing hard to regain balance.

That's it! Nice and tall. Happy Birthday Daddy.

Good job Catherine! I love you.

Wasn’t even my birthday, but it was pretty high on my list for the best gift ever!

I got an email from an old friend today. He’s many more years down the road than we are. His son has severe CP and just started college this fall. His son’s mind is as sharp as they come. And my friend, the Dad, went to college with his son to be his cook and driver and whatever else he needed to realize the dream of graduating from college. Wow!

People tell me all the time they don’t know how I do it. I look at my friend and wonder how he does it. Yet I know. For the reality is that you just do. You make choices and then get up each day and take the steps necessary to make those choices a reality. My friend is ready to come home for Christmas break – to see his wife and other son. And to rest.

And I’ve just come from a business trip where I was reminded of all that needs to happen to help our company grow. Interesting how these parts of life intersect. As one part of my brain is calculating all that needs to be done to grow a business, another is being reminded of the very long road we travel – and of the need to take time out to rest if we’re to make it all the way to wherever it is we’re going.

Seems I’m reminded of this frequently. But I’m not sure I’ve learned the lesson yet. Fortunately, life keeps giving me plenty of opportunity to practice.

We recently went to an art and music festival in Annapolis. I have a hunch Catherine responds differently to live music, so I wanted to expose her to whatever the “music” part of the festival had to offer. Turns out, it was a quartet playing at noon under a tent on a perfectly crisp fall day.

One of Catherine’s caregivers joined us because Brian was out of town alone for the first time without the family since Catherine was born. Needless to say, he deserved that respite! We perched in the middle of the venue on the grass with a blanket where Catherine could get perfect stereo sound from the giant speakers. And the music began in an upbeat, jazzy, mellow sort of way.

Sarah was pushing up against nap time. As a result, she was a bit out of her skin and wanted to run all over the place – mostly toward the brick steps that made me a little nervous. I lost track of the number of times I had to get up and run after her, but frankly it was fun, and made me smile, so I didn’t care.

In time, though we reached the end of her rope and got ready to leave. As I picked Catherine up, I realized she wanted to stand. She’s the perfect height right now so her hips fit right between my knees which enables me to give her some extra support. We started dancing to the music and in my mind, we evaporated into the air.

But then I noticed people staring. And as I looked back at them, I realized they quickly looked away. Why? Didn’t they realize they were witnessing a miracle? Couldn’t they see the hope that stood between my legs? Was it too hard to see the pure light radiating from Catherine – or at least from my smile – and realize this was something happy? Something worthy of stares. Something that makes a random observer fill with joy like when you see a toddler trying to catch bubbles.

Go ahead strangers. Stare. And smile at us when you do, please. It’ll be alright.

Catherine got to surf! Yep. I haven’t even ever tried surfing. I wimped out in Tamarindo, Costa Rica for some stupid reason, but my five-and-a-half year old (cuz that’s how she’d say it) got to surf when we were on vacation a couple of weeks ago in Wrightsville Beach, NC.

We had sent the guys fishing, so my sister-in-law and I were setting up the compound on our own. Catherine was hanging out in this super-cool beach wheelchair that the Wrightsville Beach Parks and Rec loans for free. A guy who was obviously a surf instructor watching his class in the water came over and asked me, “Have you ever thought about getting her on a board?” I have to confess, I was a little taken aback.

Frankly, I told him, I’d just read an article about surfing and kids with special needs, so I had thought about it briefly, but determined she probably couldn’t do it since she didn’t have much head control. Bummer. He saw it differently.

His name was Jack, and he runs Indo Jax Surf School in Wrightsville Beach. He runs several “outreach camps” during the summer. He’d done one for kids with cerebral palsy already. He’d done one for folks with visual impairments. He was going to be doing one that week for kids with autism in conjunction with the national program called Surfers Healing, and he wondered if we’d like to try to get her on a board. “Think about it,” he said. “You have to be comfortable with it, but we never say no if you want to try it” and he proceeded to tell me how they’d do it.

The kids with Autism were going to be there on Thursday, and I met Jack on Tuesday. As soon as Brian got back from fishing, I told him of the opportunity. We committed to checking it out on Thursday.

We loaded up Catherine and Sarah in a wagon to walk about 1.5 miles down the beach to the event. The weather looked threatening, but hope kept us walking toward the clouds and toward the crowd. We watched these huge surf instructors pop the kids up on boards like they were little beans. Mostly what you could see were the smiles. The kids were exstatic. The instructors possibly moreso. And the parents, friends and passersby on shore were cheering with more enthusiasm than any professional sports fans. They had more heart and it was way more spectacular to see these kids ride in on the waves.

Jack said we’d probably get to go in the afternoon after the camp participants got to go. Understanding of course, we opted to head back to the house thinking we might beat the rain, which didn’t happen. Soaked, we snuggled in for lunch and naps and prepared for the afternoon waiting to surf.

When we got back to the event site, we learned they’d had a rain delay so we’d have to wait longer. No worries. We played in the sand and watched the kids and parents having a wonderful time. Every now and then, Jack checked in to say, “Just a little while longer.” Eventually, it was Catherine’s turn.

She donned a rash guard and life vest and guys carried her out to the ocean and Brian and I stood with Sarah taking photos and video and marveling in the attempt. We had no idea what to expect. Jack got on the board with her. He laid on his belly and propped Catherine against his shoulder. One guy watched the waves and other guys were on either side of the board. Eventually, after waiting for the right wave, they rode into shore, as Brian and I recorded it as best as we could. Catherine, however started coughing and struggling to breathe. And she couldn’t relax. Uh oh, I thought. Did we do the right thing?

I got a little nervous as did Brian, I think. We took her from Jack and they went to surf with another kid while we tried to calm Catherine and help her breathe better. Catherine has stridor now, which makes it hard for her to breathe sometimes due to inflammation in her throat. At it’s worst, it progresses to the point where she needs oxygen. We didn’t have any oxygen.

I just held her in the surf and unzipped her pfd to open her chest a bit more. I walked in with her and rocked her and sang to her to help her relax. Eventually, she settled down enough for me to look at her wet face with her hair tossled in ringlets. And she smiled. It’s the first time I actually thought Catherine smiled as a result of something she did, so I interpreted it that she wanted to go again. Indeed.

We called over to Jack and the other guys who ran over to see that she was OK. They eagerly took her for a second run and she rode in even better the next time. We scooped her up and danced and congratulated her and called her “surfer chick” the rest of the day.

Needless to say, we were thrilled. The surf instructors were pretty psyched, too. They were obviously exhausted from the day, yet they took time to make a little girl smile. They also bathed my soul in light and warmth, and I told them that they didn’t just help the kids that day, they helped the parents. It’s hard to have a kid who isn’t included by peers and family. Getting to see her surf makes all that pain go away for a bit, and that keeps the hope alive.

Hang Ten, Catherine! Hang Ten.

Waiting for the big one.

To see photos of the Surfers Healing event, including shots of Catherine, on the IndoJax website, click here.

Hi, I’m Ellen

I’m just a mom making my way, but my way is a little different. And yet, very much the same. I have a 13-year-old daughter, Catherine, who was born at 25 weeks and weighed one pound, nine ounces. Despite a very severe brain bleed, she lived and inspires me every day with all she works so hard to do... Read More…